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Tuesday, August 23, 2016

Someday I will accept that getting my kids to look at the camera at the same time and smile is impossible.

Today is not that day.

I tried. I really did.

I had this perfect first day of school picture in my head. All the kids were in it when I imagined it, but Maggie sprinted to the car and wanted nothing to do with my picture taking. So I convinced these two to pause on their rush to get to the car. Kind of.

Smile guys.

Okay can you both look at the camera.

Okay good. Real smiles! Happy smiles! We're going to school!

Over here! Look at the camera! Could you stand a tiny bit closer to each other? Maybe hold hands?

Monday, August 22, 2016

Somehow he's spent the last few months collecting new doctors and therapists the way that some people collect Pokémon.

To be honest, while he definitely has a gross motor delay, I find myself not overly worried about whatever it is that's going on.

Since I haven't blogged much lately, and to have my thoughts gathered all in one place, so that at some future date I can look back and chuckle that we were worried at all,I'll give a little bit of background.

Between the ages of three and five months old we noticed that James seemed kind of floppy for his age. He wouldn't hold his head up. We needed to support it like he was a newborn (right now Tessie has better head control at seven weeks than he had at six months). We were introduced to words like hypotonia and hyperflexible by his pediatrician, who kept a close watch on him. He spent an enormous amount of time on his tummy, but it made not difference.

When he still wasn't sitting up unsupported at ten months, his pediatrician decided it was time to be a little more proactive in making sure nothing else was going on. He was bombing just about every category on the ASQ (ages and stage questionnaire) by then and as I watched my ten month old, who couldn't sit up in a high chair by himself, I was starting to worry.

His doctor referred him to the same neurologist that Maggie sees and also referred him to our state's early intervention program, where he was assessed and found to have a more than 20% delay, which qualified him for physical therapy. The neurologist ran a few tests and said to come back in a few months.

At physical therapy we found that he strongly preferred his left side over his right. If there was a way that he could avoid using his right arm and leg, he'd find it. Having a preference of one side over the other isn't a big deal with someone who's older, but it isn't supposed to happen with someone who's teeny tiny.

After watching the left side preference and low tone for almost a year, James' neurologist sent him for an MRI. And after one very long day and a weeks wait, I got a call from an assistant at the neurology department telling me that everything looked fine except... (the next few seconds were some of the longest in my life) he had a sinus infection (sigh of relief) and I should call his regular pediatrician so that we could see if she thought it needed to be treated (by then it didn't).

A few months ago his physical therapist and neurologist decided he needed orthotics. He'd started walking a little after eighteen months, but his feet turned in and his ankles rolled in wildly, making him trip every few steps. In the beginning his entire right side would give in, causing even more falls, but that's improved drastically in the last couple months, although he still falls every minute or so.

A few months ago his neurologist and pediatrician both decided separately that they would be writing referrals for genetic testing and in September he'll finally get in to see the same geneticist that Maggie saw in April (we're still waiting on test results to process for her). His neurologist doesn't want to do anything until the genetic results are back. After spending five minutes trying to get a single reflex response from James knees and ankles and getting absolutely no movement he mentioned a test involving sticking needles in muscles to see how they're working, but we're avoiding that at all costs, since he said it'd be pretty unpleasant.

This week he'll be seeing a orthopedic specialist to make sure there's nothing else that needs to be done about his toes insisting on pointing in. He's also been seeing an early interventionist (kind of a general therapist who works on gross motor and fine motor and speech and social skills with him) and will meet his new physical therapist this week. And most recently there have been suggestions of adding OT to the list, which I'm hoping he doesn't need... but will go along with since I know that therapies at this age can mean far less therapy later on.

In a lot of ways it's odd because he's the polar opposite of Maggie, who took her first steps at ten months and was climbing up on top of Sadie's giant bouncy horse and riding it when she was barely one.

Still, as I watch the determination with which James has faced these challenges that seem just a little tougher for him than they are for everybody else, like rolling over or sitting up or walking, I can't help but feel like it's all going to be okay.

Although if you want to throw up a prayer that maybe he stops adding new doctor's appointments to the schedule, and keeps growing healthy and strong, I would most definitely appreciate it.

Sunday, August 21, 2016

There was a little moment today that is imprinted on my mind. It only lasted a few seconds, and I doubt anyone else realized what was going on, but I did and for the rest of the day I've thought about it.

Today was a barbeque at our new parish and for the first time in a very long time we decided to go. Without the food allergies it was an actual possibility.

There was a tent with tables set up under it a short distance away from the school's playground. We walked the kids halfway to the playground, which is fenced in, and told them to go play while we walked back to grab plates and food.

We thought that the easiest thing to do would be to get the food and a table and then call them over, letting them get their wiggles out after Mass before we sat down to eat.

Patch noticed immediately that we weren't over by the playground and came sprinting over to stand in line next to me.

I had my eyes glued to Maggie while I waited and suddenly I saw her stop and look around and realize that we weren't right there watching her.

And she turned around and ran back towards the tent. I watched for a few seconds as she got closer and her eyes swept back and forth through the faces of the people already at the tables, searching for us. I said "Maggie!" and she saw us and Paul walked over and she held his hand and walked to a table and sat down.

This is huge. Since Maggie was a tiny baby she would take off and not look back. When she was ten months old I watched her as she crawled off across a field, to see how far she would go, and she simply kept crawling, totally oblivious to the fact that she was leaving me behind. When she eloped last summer she didn't seem concerned with being out in the forest on her own.

She has always seemed to be totally unconcerned with whether the rest of us were coming with her when she was attempting to go out on her own.

So noticing that we aren't right there with her and coming to look for us is a milestone that felt incredibly far off, not all that long ago.

Saturday, August 20, 2016

Earlier this week I realized that the apple sticks I'd been buying had wheat in them. I couldn't believe I'd made that mistake. I check labels compulsively. I recheck labels that I've already checked a dozen times, because time has taught me that labels can change and that just because something was dairy free last month doesn't necessarily mean it's dairy free this month.

This wasn't a mistake like that though. I've been buying veggies sticks at Aldi for months now and they're gluten free. The apple sticks were in the same sort of packaging and for some reason my brain just assumed they were okay.

In the last month both Sadie and Patch have outgrown their allergies. It's been amazing. When the allergist called and said the retest for Sadie showed no allergies at all, and that we could start gradually reintroducing foods and see what happened, I was ecstatic. And Patch will still get sick if he has regular cow's milk (which he despises) but all the other dairy products he's tested out have been fine.

Still, I was afraid to even try gluten or casein with Maggie. You see, she never tested as having allergies like the other two. She would just get really, really sick every time she ate even the tiniest amount of either food. The first three times it happened I was still skeptical. But then it happened like clockwork after every exposure, and I realized that she really, really couldn't have almost all of her favorite foods.

There were times when she managed to sneak a tiny bite of something with wheat in it, and I'd forget to mention it to her therapists and would get a call a few hours later asking if she'd had gluten because they could tell. It happened over and over again (as she'd usually manage to sneak something every three months or so) over the course of the last three years, at more than one office.

So I was stunned when I realized that she'd been eating apple sticks, made primarily from wheat, for a week and a half and hadn't had a reaction. I quickly texted her main therapist and asked if they'd noticed anything in the last week. She said that they hadn't, that Maggie was doing better than ever.

And so we decided to see if she'd outgrown her allergy and that night I let her have three graham crackers.

I waited. Would she be up all night sobbing because her stomach hurt? Would she lose all the words that she has and cry non stop for the next two weeks?

The answer, for the first time in three years, was no. She was fine. When I tucked her in she ran through the names of the Bubble Guppies on her backpack, pointed out and labeled all the colors on it, and then asked if we could go to the "swimming beach." When I said no we couldn't, it was night, but maybe we could ask Daddy if we can go soon, she asked to go to Daddy's office. She hasn't even seen his office yet, which added to the general shock I was feeling having just had the longest back and forth conversation (by far) we'd ever had in her entire life. So we called Paul and asked if she could come see his office soon and she repeated "Daddy's office?" a half dozen times before drifting off to sleep.

Since then I've let her have a tiny bit of cheese. He therapy tech said she had another great day, with a huge amount of language, and that she'd been trying to run her own therapy program, but that she had been a little emotional. Since emotional days happen now and then anyways, the jury is still out on dairy, but we had another rather long back and forth conversation at bedtime, and so I'm cautiously optimistic.

I'll admit that this has brought up some questions though.

Before we moved to Michigan, into an old house built in the 1920s, no one in the family had food allergies. After living there for a year, all three of our kids had food allergies. And we were all sick constantly.

Over the course of the time that we lived there the basement would flood every year (not a huge flood, but a steam going from one side of the basement, through a wall, to the other), along with the yearly backing up of the sewer when the tree roots would grow into the clay pipes, which meant another flood. I was constantly battling mold with bleach after the floods. I wouldn't be able to see any mold after I was done cleaning, and everything would look fine, but I wondered. And worried.

We've been out of the house for four months now and the three kids who had allergies while we lived there all seem to be allergy free. No one has been sick since we've moved. In fact, I feel ten times better than I've felt in years. And I can't help but wonder if somehow it's related.

I asked Maggie's neurologist at her appointment last week and he said we probably would never really know. But I can't help but wonder.

Now to make a new meal plan and a new shopping list (that will be spectacularly less expensive). I'm pretty giddy. This means we can do things like church picnics and doughnuts after Mass and all the things that were little family traditions that were so hard to give up.

Friday, August 19, 2016

Things have been busy around here. I'm eleven pages out from finishing the third proof read of the book, which happens to be the last one I'm doing before sending it out to agents. I've been working on query letters, which for some reason is more intimidating than actually spending a year and a half writing the book and proof reading it (and if anyone knows an agent who represents fantasy authors...).

-2-

Tessie continues to try to prove that she's the most laid back baby we've ever welcomed into our family. She first shocked us by sleeping nine hours at three weeks and has continued to do so, while growing like a weed, for the last four weeks. She's wearing six month clothes now and I packed up the teeny tiny clothes last night while lamenting that she can't fit into them for a bit longer.

I should probably mention that a certain eight year old woke up basically every hour for the first eighteen months of her life... so I like to pretend that a baby that sleeps like this is a reward for surviving the colic/reflux sleeplessness that was 2008-2009. I think anyone who has another child after surviving a high maintenance baby should be awarded a good sleeper the next time around.

-3-

Paul is in the process of opening his own law firm, has started working doing sub contracting for another lawyer, and is fitting all this in while continuing to work at his other job. Which has made the schedule a little extra crazy lately.

I really, really wanted to post a picture of his office, which looks great, but he's in the car driving from one thing to another right now so I can't ask him if that's okay... so I guess it will have to wait for now.

-4-

When he's not around I'll admit I do kind of feel like I deserve some sort of a medal when I load or unload all five kids in and out of the car together.

A couple weeks ago I took all of them into a store together, by myself, and it was kind of like putting a circus on top of a shopping cart and pushing it around a store. At least it was if the looks we got were any indication.

Although I can't really blame anyone who starred, considering the fact that us walking around anywhere (or driving, or sitting, or breathing...) is basically always accompanied by a play by play commentary by Patch, who is a pretty hilarious little kid.

An example of this would be when we're walking through the super market and I hear Patch say (in that loud voice that just doesn't get any quieter despite multiple "indoor voice" reminders): "You need go pee pee in the potty Mommy? Pee pee in the potty? You have go pee pee in the potty if you want to go to school Mommy!"

-5-

Patch got to visit his preschool this past week and James cried all the way home (although Patch was in the car with us) when we had to leave. He even told me "bye bye" while settling down to play with a toy. I don't think he's going to be thrilled when the first day of school arrives and it's just me and him and Tessie on our own.

-6-

I think I'm almost halfway through unpacking the boxes in the garage. I've realized as I've unpacked that roughly half the boxes in there are filled with books.

And after seriously searching at thrift stores and garage sales I finally found two chairs that I love that make the living room look a little less empty. Here's what it looks like at the moment:

James thinks that this chair is his:

-7-

Sometimes, when the newness of a new baby has worn off a bit for the older siblings, I forget how carrying a brand new baby through the house is a bit like walking around with a celebrity. Right now we're still in the thick of things:

Patch is especially smitten.

And even James is pretty fond of her.

I knew both girls would be crazy about her, but I didn't quite anticipate how sweet the boys would be:

Tuesday, August 9, 2016

She'll be six weeks old tomorrow and I'm finally getting about 10% of her smiles.

Previously 100% of her smiles were directed at the ceiling fan, which let's face it, is still the recipient of 9 out of 10 smiles around here. Babies love ceiling fans. What can I say?

I do totally use it to my advantage though, when I'm folding laundry and she wakes up and is about to cry . If the ceiling fan isn't already on I quickly flip the switch and it immediately catches her attention and most of the time it makes her one happy baby.

All the kids love her but Patrick and James were especially enchanted this morning since she was wearing a Minnie Mouse dress and they think that all things related to Mickey Mouse are wonderful.

And I realized that Maggie allowed me to start putting her hair up and started wearing a bow the same week I started putting a little bow in Tessie's hair.

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